i've got some confessing to do:
after i was on gleevec for a week, i went into my doc appointment for blood work and a weigh in. sort of how wrestlers are really careful with their weight, we have to be careful with my weight on the gleevec. appaaaaarently there are some possible deadly side effects of gleevec...one in which is severe fluid retention. click here to read about all side effects. confession; i gained 5 lbs in a week. my excuse is that it was the day after easter...of course there's an extra 5 lbs, duh. well, the docs didn't like my reasoning so they made me go off of gleevec for a few (6) days. they wanted me to start from scratch and increase my dose at a much slower rate so i would be more likely to tolerate it.
last week i tried to move up to 4 pills a day (after i was only taking 2 a day)...oh boy. i felt like i got ran over by a train. or chuck norris. gleevec also causes bone aches and muscle aches... onTOP of my already aching muscles and nerves. i seriously felt like a 90 year old who got attacked by something that showed no mercy on her. it was terrible. so i moved down to 3 pills.
also, i guess gleevec is a chemo pill. wierd. i didnt know this when i started the trail, i just thought gleevec was like a chemo. i wanted to be sure so i emailed indiana and asked straight up 'am i on cheeemo?' sure enough. i am. super weird. i wont loose my hair from this form of it, yippee! buuuut the gleevec may kill me. sweet right? i don't think it will, so only if you heard my tone. i am being sarcastic. but still....its a bit freaky.
i wanted to share these little details with you guys sooner, but i just wanted to make sure that i was able to tolerate the gleevec before i said anything. indianna said that if i cant maintain my weight then i wont be able to continue the trial. when they told me this my heart sank. i felt like i was allergic to my "armour". its hard to realize that no matter how tuff i think i am...not only are my tumors out of my control, my toleration to gleevec is as well. we are all here only by the mercy of God. i am thankful for my constant reminder of how i am in His hands, even though that reality also shows the depth of my weakness.
so anyways, i bought a scale and a water bottle and stopped pouring salt on my food. i'm drinking at least 2 liters of water a day and peeing every 20 minutes, this combined with my nausea and fatigue...im basically pregnant without ya know, that small detail of a baby.
Hi there my name is Silvana and i live in the United Kingdom. I have been diagnosed with neaurofibromatosis for 25 years. Doctors still dont know which type I have as I have ailments of both type 1 and 2. I have undergone 2 brain operations, 2 neck operations, 1 spinal operation, 1 lower arm operation, a historectamy and 2 thorasic operations. I still have growing tumors which are reviewed every 6 months to 2 years depending on the severity of them.
ReplyDeleteI read your story in the bella magazine and it gives me hope that you can still get on with life also i think its good that this disease is spoken about as its not common in people.
I find it very hard to talk about it as there's noone i know that can fully understand and thats where i saw your story and thought i must get incontact.
Some days are worse than others,from hardly being able to walk to sleepless nights as i cant lye on my back straight. Im going to see a professor next week in guys hospital london to get my full MRI body results where ill find out where all my tumors are and how many i have as well as what type i have.
I am also under a genetics team who use me as a dummy (if you like) to get to know this disease abit more.
Im on pregabalin 100mg a day to control my pain, i have to sit on a pressure coushin as without it i get shooting pains up my leg, buttock cheek and spine
Hope to hear from you soon
Silvana